The experience of friendship among adolescents with Neurofibromatosis Type I

Date of Award


Degree Type


Degree Name

Doctor of Philosophy (PhD)


Child and Family Studies


Kathleen Lenerz


Neurofibromatosis Type I, Friendship, Well-being, Development

Subject Categories

Developmental Psychology


Adolescent friendships contribute in multiple ways to psychosocial well-being and development (Ginsberg, Gottman, & Parker, 1986; Weiss, 1974). This research examined friendship in a population of adolescents with neurofibromatosis (NF), a progressive neurological disorder characterized by disfiguring changes in physical appearance and frequently accompanied by learning disabilities. The research goal was to describe the experience of friendship among adolescents with NF from the viewpoint of the adolescents themselves. This study employed symbolic interaction theory (S.I.) as a lens through which to study the adolescent friendship experience. That is, peer relationships and friendships were viewed as a social phenomenon from which the adolescent derives personal meaning. The major research question was: What is the experience of friendship among adolescents with Neurofibromatosis Type I (NF)?

Fourteen participants, seven male and seven female, were sampled from the pool of adolescent clients aged 13-19 who attend a regional neurofibromatosis clinic of culturally diverse clientele. Half the adolescents (four female and three male) had a learning disability, while half did not. Two females and two males had grade I disease (minimal NF), while four females and three males had grade II disease (mild NF). Two females and one male were significantly disfigured and were classified as having grade III disease (moderate NF). Two participants were African-American and the remaining were European-American.

The most important finding of this study was that adolescents with NF and learning disability experienced greater disturbances in friendship than did adolescents with NF and no learning disability. Learning disability stood out among other variables such as degree of disfigurement, self-perception, pattern of friendship, age, or sex as providing a basis for alterations in friendships. The participants of this study fell into two groups: the high impact group who experienced a significant impact of NF on their lives and the low impact group who experienced little or no impact of NF on their lives. These groups were contrasted. Overall, this study did not support the findings of Offer, Ostrov, & Howard (1991) that suggest physically ill adolescents more frequently lack the ability to make and keep friends than do healthy adolescents, nor did it support a physical attractiveness stereotype (Adams, 1977; Lerner et al., 1991). Two adolescents from the high impact group did, however, experience rejection in their heterosexual relationships. Suggestions for future directions of research are made.


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